We know that an SMA diagnosis can be overwhelming. You may be confused, scared, frustrated, or uncertain—and your emotions may change daily or even hourly. But you are not alone. You are now part of Cure SMA.

Know Your Options

While spinal muscular atrophy (SMA) affects individuals of all ages, it is usually first diagnosed in infants or children. There are multiple treatments for SMA approved by the U.S. Food and Drug Administration (FDA) and many other treatments being tested in clinical trials. This means that individuals with SMA and their families can choose the course of care and treatment that best fits their needs, goals, and values.

We acknowledge that it can be overwhelming to learn about and understand your options, especially when you are already overwhelmed with news of the diagnosis. However, research consistently shows that the earlier treatment can begin, the better. For babies who are identified through newborn screening, this means beginning treatment even before the baby shows symptoms of SMA.

It is important to contact your doctor or other healthcare provider immediately and learn about your options. We realize it can be a challenge to act fast, perhaps before you fully understand your child’s illness. But your child’s health depends on it.

Cure SMA is a network of individuals with SMA, families, researchers, clinicians, and other health professionals who are determined to make a difference for all people with SMA. To learn more, email [email protected].

Know What To Do

  • If your baby was diagnosed through a newborn screening test, contact your pediatrician or other healthcare provider, and share your test results if you have not already. Say it’s urgent that your baby get an appointment.

  • You may already have confirmation of an SMA diagnosis, or you may be waiting for a blood test to confirm the diagnosis. If you are waiting, it may take 1-2 weeks to get results. While you wait, continue to care for your child as you always have. You should not do anything different, unless the child shows any unusual signs or symptoms.

  • Ask your healthcare provider for a referral to a specialist. Often, though not always, you will be referred to a pediatric neurologist, a doctor who specializes in diseases of the nervous system in children.

  • Get more information and immediate support by connecting with Cure SMA.

Connect with Cure SMA

Contact Our Support Team

Our community support staff is here to help and assist those with SMA and their families. This may mean providing information on SMA, connecting you with resources in your community, or just being a listening ear. Our Support Team can be reached via phone or email at (800) 886.1762 or [email protected].

Request Information Packet

We provide an unbiased, comprehensive information packet to anyone who requests one. These packets cover topics such as understanding SMA, genetics and testing, current research updates, medical issues, managing daily life, and more. To request an Information Packet, email us at [email protected].

Check Out Equipment Pool

Cure SMA loans necessary medical equipment free of charge. Our equipment inventory changes often as new equipment is donated and other items are loaned out. Visit our equipment pool page to learn more about what type of items we have to send out. To find out if an item is currently available, please email [email protected].

Request a Care Package

Every newly diagnosed family within the U.S. who contacts us receives a Cure SMA Care Package. Each package has toys appropriate to the child’s age and SMA Type. Many items have been suggested by other SMA parents based on their own experiences. We also include a Newly Diagnosed Binder in each package. These contain important information about SMA, including our Care Series Booklets and a list of resources available in your state. This binder can also help you organize, keeping important medical information all in one location. To request a Care Package, email [email protected].

Learn About Annual SMA Conference

The Annual SMA Conference is the world’s largest gathering of people with SMA, families, researchers, and healthcare professionals. Each year, we host a special program just for newly diagnosed families, and offer a newly diagnosed scholarship program that covers the costs of up to four (4) family members’ registration fees, as well as one (1) hotel room for three (3) nights for newly diagnosed families. Through the support of generous donors, we also offer need-based scholarships for others who are not newly diagnosed.

Find Local Cure SMA Chapter

Cure SMA has 36 chapters across the U.S. Chapters are a great way to meet other individuals with SMA or families in your area to share practical information and advice, or simply to connect with someone who understands what you are going through.